Wednesday, July 8, 2009

Time

Where do I begin? I haven't blogged because I've been trying to absorb the latest news. One of our kitties has been diagnosed with terminal mammary duct cancer. The tumor is very large which means the cancer has spread. I asked the vet how long she has and the vet said "it depends. maybe months but she doesn't have a year." Its heartbreaking. This kitty (Tiger Lily) is so full of love. Her favorite things are laps (which equals love to her), food, and milk. She has a pure, innocent heart.

So there's me with my illness, Katie with chronic renal failure (I've been blessed that she is relatively stable-knock on wood), and now Tiger Lily.

These little beings have been my constant companions for the past two years since becoming ill. I've spent more time with them than anyone else so they are a big part of my world.

So I find myself once again in this weird relationship with time where, on the one hand I want time to pass quickly in terms of finishing Valcyte, getting on with other treatments, etc...but on the other hand I want time to standstill so that Tiger Lily will always be here.

Its been hard to focus on anything else or even write.

I just have to say how much I hate cancer-it took my mom at a young age, it took my cousin at a young age, my dad has prostate cancer and chronic lymphatic leukemia, it took my kitty Amelia, and now this little kitty has to suffer with it.

I had the Tilt Table Test on Thursday and passed. I was surprised as I was certain I would fail it. The cardiologist spoke to me afterwards and said it still doesn't rule out Postural Orthostatic Tachycardia Syndrome and said there was a significant change in my heart rate upon standing. I watched my blood pressure and heart rate each time the blood pressure cuff took its measurements. Laying down it averaged 88 beats per minute. Standing it went as high as 128 at one point but seemed to average around 105 beats per minute. My blood pressure was borderline high averaging about 141/92. It would drop, go up , go down and seemed like it was all over the place although the lowest it ever dropped was around 112/76. The doctor said I needed to increase my fluid and salt intake. Thanks to Sue Jackson's advice I've already been doing that although I need to drink V-8 every day. He also said to not stand in one place for very long and be careful when I get up.

I'm not sure what to think. I was hoping that I'd be able to take something that would increase my functioning. I said to the cardiologist I really want to be able to drive on the freeway again or drive without worrying about fainting. He said the next step would be to consult with a neurologist.

I did fine on Thursday and then crashed. I have all the symptoms of POTS. I'll talk to my CFS doctor about what's next in terms of the heart rate stuff.

So its been a rough go of it these past few days. I'll post a more thorough update on things once I feel a little better emotionally.

8 comments:

So sorry to hear about your kitten, Terri. We lost our sweet little hamster, Teddy, to cancer last year,and it was awful. We've also lost many, many family members to cancer over the past 5 years, so I can really relate to what you're saying.

As for the tilt table test, I'm pretty confused. You don't have to actually faint to have POTS - lots of people, especially those with CFS, just get sick. My son and I have never, ever fainted, and we both have POTS and NMH. The rule of thumb is that you have POTS if your pulse rate jumps by 15 or more points when upright, and it sounds like yours did. Based on that, you should be able to try treatments.

Adults rarely respond to Florinef as well as kids do (it's been like a miracle for my boys but did nothing for me), but I know some people have had good results from others meds, including SSRIs. I take other meds for other reasons that help with OI - birth control pills help to increase blood volume and pressure and decongestants help to constrict blood vessels to keep pressure from dropping. I also take licorice root which increases blood pressure, but you should check with your doctor first.

I hope you'll get a more solid answer when you discuss the results with your regular doctor. Meanwhile, lots of salts and fluids!

Sorry you're going through such a difficult time - I hope your kitten is able to enjoy many more months of happy life with you.

Terri, So sorry about your sweet little feline friend. She sounds like she gives you comfort and makes you smile.

Terri, have you had a "heart monitor" test- cardiologist hooks you up to a portable monitor, you go home wearing the monitor for twenty four hours and it records your heartrate non-stop. It catches tachycardia which is a consequence of NMH and might help clarify what's happening and help in the POTS diagnosis.

It's so frustrating when tests results don't reflect our physical reality! Such a part of life for those of us with complex chronic illness.

Remembered something wanted to share. A medication for NMH (holds blood pressure up) is called Midodrine. It is short acting, but can get one through an outing etc. The side effects are hard when it wears off though...you have to lay down and you can feel really cold for awhile. It's to nice to have though for times you have to stand up for longer than minutes at a time. How we need NMH medicine without side effects!

I'm so sorry to hear about your kitten, as well as your past losses. What a difficult thing to go through.

I never know what to make of the tilt table test results, to be honest. All of this was based on a small research study and I think diagnosing POTS is more complex than that. I have to be careful when I move suddenly because I get swimmy and lose my balance but I don't faint. Yet...I'm housebound and have all of the other symptoms.

I just wanted to second what Sue said about POTS. My cardiologist concluded I had it without giving me a tilt table test. He based it on the fact that my pulse increases by 15-10 beats when I stand up. He told me to increase fluids, take salt tablets, and also wrote a prescription for Florinef. The Florinef helped a lot at first but its effects wore off. But you may have more permanent positive results. Some adults do.

I grieve for you -- I think some people under-estimate the grief we can have for our pets b/c they are such a huge part of our lives. I'm so sorry!

I know all about the tilt table test; I've never had it done, but my aunt has and failed (even thought she didn't faint, her heart rate and blood pressure did the opposite of what it's supposed to do). She's told me several times I should have it done b/c I get to light-headed when I stand up.

Just wanted to mention...you may want to consider taking sea salt instead of salt tablets or table salt. Have you heard of the salt and C protocol? http://www.realsalt.com/ is the salt that many patients on this protocol use. It is cheap & real sea salt.

This will not only replace the sodium and potassium you're having difficulty retaining due to reduced vasopressin (pituitary dysfunction) and aldosterone (hypoadrenal) but will replace a host of other minerals that most CFIDS patients are deficient in.

Another possible bonus: it may kill parasites. That's what the patients on salt & C say anyway. I take about a teaspoon a day with my lemon juice/apple cider vinegar (alkalinizing drink)

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I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help